Tuesday, April 17, 2012

Second night of quiet

Will and I have had a good day, but just like yesterday, Will fell asleep and stayed asleep tonight.  No seizure activity.  Is it weird that I feel a little bummed about that?

He had a great time hanging out with Grandpa Harry today, showing off his iPad games, love of coughing and sneezing, and vast array of Elmo DVDs.  I was grateful for the company, coffee and non-hospital food lunch :) Having family and friends stop by has really made this EEG confinement better for all of us! Thanks to Rena for stopping by tonight to hang out, bring me dinner and dessert. The nurses appreciated the extra fruit tart :)

There has been a lot of regular maintenance on Will's EEG leads. This morning, a different EEG tech stopped in to reattach 7 of Will's leads. This tech was a man of Russian descent, and he had Will laughing. Later in the day, the tech from yesterday (the one Will screamed at a lot) came in to apply new transmission gel to the inside of each of his EEG leads. Will saw her and started screaming again. She tried to talk with a Russian accent, but that did nothing to quiet Will.

I met with several doctors today. They continue to slowly decrease Will's carbatrol - he's currently at 50% of his typical dosage and they'll step down by 25% tomorrow. They will also decrease his Lamactil dosage tomorrow as well.

They told me that they have to be careful stepping down Will's medications because he has "such an active EEG." I didn't really know what this meant. I asked our doctor, who said that some activity is good because no activity means you're dead.

I like the sarcasm.

On a serious note, she added that although they have seen no seizures on Will's EEGs yet, he shows a lot of atypical brain activity (hence the "active" comment above). Given his brain damage and morphology, this isn't really unexpected. But because of this increased and atypical activity, their concern is that when they take his medications lower, they will see an astronomical increase in seizure activity. Each day that passes, they lower his medication levels and the chances of a seizure rises.

In addition to the chief, the attending, and the fellow, I also met with a second year neurology resident today. She isn't on our case. She doesn't know a thing about Will. But I am friends with her sister on Facebook, and my friend wanted her neurologist sister to check in on us and make sure we were being taken care of. I love Facebook and the kindness of friends and strangers alike. She and I talked for a long time about our case and our care, and we again determined that we're in the best possible place to manage the care and treatment of Will's epilepsy!

Will has been in a great mood over the past day. I don't know if it is because they are stepping down his medications (perhaps the meds have side effects that make Will feel yucky), because he's getting a lot of one-on-one attention (and you know those Slavik boys LOVE to be the only child), or if he's enjoying the endless supply of Elmo DVDs... but considering Will is on a 10 foot tether and can't do much besides lay in his bed and sit in his wheelchair, he's doing amazingly well. I think he's curious why I keep taking pictures of him... "Mom, seriously... I am doing the same thing as yesterday. I just have a different shirt and a new gauze wrap on my head."

I continue to be amazed and humbled by the outpouring of support. Thanks everyone for the prayers and thoughts, kind notes on Facebook and email, meals, and phone calls. Thanks also for helping us laugh. This is truly the best medicine when you aren't sure what else to do.

I got this photo from Nate earlier this evening, with the note "Brother Solidarity." I laughed for a solid minute. Quietly, of course, didn't want to disrupt Will and any potential seizure! 

Tomorrow, Nate is driving up to Baltimore and I will head back to North Carolina.  I am excited to see Luke and Matt, but am torn between that and wanting to stay here to see Will through these next couple of days (likely free of seizure medication).   The separation is tough (though the nurses tell me this is typically how parents with other children handle their EMU stay) but worth it to make sure everyone is covered and life continues as normally as possible.  Thanks to Oma for handling these transition days.  Please continue to hope and pray we don't have too many more of them - bring on the seizures, bring on the data, bring on the knowledge and the expertise... then kick us out the door!

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